Friday, December 31, 2004

Happy New Year!

I hope you're all out having fun. I'm working New Year's Eve and New Year's Day, so make an extra champagne toast for me! :-)

Fortunately, not only do I like my job, but I have one of the most stunningly handsome patients this weekend. I don't know that I've ever viewed a dying man or woman on that level before. And it's so inappropriate. But it's kind of nice to have some eye candy as a treat since I'm working the holiday. Oh, he has some more life in him, so I'm not digging his grave yet or anything. Somehow that makes it seem less horrifying that I'm admiring his beauty so. His partner is also handsome, though he doesn't have the same dramatic elements to his features. I keep expecting his personality to be as vibrant as his good looks. But unfortunately, under the circumstances, I suppose that is more than one can expect. He is, not surprisingly, seeming a tad bit depressed to say the least. Hopefully we can get him out of the hospital soon. That is usually enough to cheer just about anyone up!

And may you all stay out of the hospital in 2005 as well! Speaking of... please drive safe tonight!

Happy New Year!

Wednesday, December 29, 2004

Web-based Resources: Death-related Questionnaires

I have just discovered a whole new genre of web-based resources on death and dying - death-related questionnaires.

Leave Life is a web-based questionnaire that helps people explore their feelings about death and dying - whether their thoughts are about their own inevitable death or the death of a loved one. The questionnaire combines thought-provoking multiple choice questions as well as fill-in-the-blank text answers. The author is very sensitive to people's different levels of comfort with the topic of death and dying and continually reminds people that they can stop the questionnaire at any point. This excellent resource, however, contains some textboxes with font that is difficult to read. The site map page is helpful as there are links on each page that skip you ahead several sections. As a result, referring back to the site map is essential. The questionnaire is not analyzed and you are not graded in any way on your responses.

With the Reflections on Death questionnaire, visitors have the option of publishing their responses for public review. The author of the Reflections questionnaire states: "The idea of the questionnaire is to help you see Death as Teacher instead of merely as something to dread or suffer through." I think this applies to both questionnaires.

The Leave Life questionnaire allows you to either print out the survey so that you can hand write your responses, save the survey to your computer so you may type and save your responses or fill the questionnaire out on their webpage. The Reflections questionnaire is only available on-line and you must allow at least an hour to complete it, as it must be done in one sitting.

Leave Life also has a listing of other questionnaires including a depression scale, quality of life scale, Schedule of Attitudes toward Hastened Death, a tool for Scoring a Terminal Ill Patient's Desire for Death, among others.

Check these excellent resources out!

Sunday, December 26, 2004

Symptomatology 5: Nausea & Vomiting

As a review, some of the symptoms of dying that I have mentioned to some degree in previous posts include:

One to three months prior to death:
-Spiritual Distress

One to two weeks prior to death:
-Picking at Clothes / Tubing

Days or Hours prior to death:
-Fixed stare (Eyes glassy, tearing, half or fully open)
-Death rattle
-Wavering level of consciousness

Next, I want to write about nausea and vomiting.

I have often said that if there is a hell, my hell would be to be nauseous for eternity. I truly cannot stand the sensation. Not that anyone enjoys it, but for me, there is nothing worse than nausea and/or vomiting.

Fortunately, I have not had very many patients who were experiencing nausea and vomiting at the end of life. People with some diseases, such as cancers that have metastasized to the abdominal cavity (peritoneal mets), are at an increased risk of developing nausea and vomiting.

I have had one patient whom was having quite a bit of vomiting. Fortunately, she wasn't feeling nauseous. She would just vomit unexpectedly on a fairly regular basis. She was experiencing a bleeding ulcer in her stomach and was vomiting up the blood that had accumulated. (Sorry for those of you who are disturbed by graphic details such as these). For her, we put a tube through her nose and into her stomach which vacuumed out the blood. This resolved the vomiting and kept her comfortable until she passed.

There are other causes for nausea and vomiting at the end of life that may not be as easy to manage. Though she wasn’t my patient, one woman developed intractable nausea (nausea that persisted despite numerous medications). There is, however, a commonly used “cocktail” for the treatment of this persistent nausea.

Anti-emetic cocktail for hospice that “works for EVERYONE” - 5mL consisting of:
· 15mg Benadryl
· 0.5 mg Ativan
· 0.25mg Haldol
· 3.0 mg Decadron

This woman was a nurse, however, and knew that the side effect, particularly of the Decadron component of this cocktail was severe bloating through your entire body. She refused the cocktail despite the intolerable nausea. She wanted to die with dignity, looking as much like her self from before her sickness as she could. As days passed, however, she realized the nausea prevented her from enjoying what little time she had left with her family. She finally agreed to the cocktail. Her nausea subsided immediately. And though she did in fact puff up as she feared she would, she was no longer as concerned with her appearance as she was with saying "goodbye." She died in the end, comfortable and at peace with her family.

Wednesday, December 22, 2004

Silent Strokes

Sorry for my silence as of late. I recently received news that my grandmother has had another stroke. This is her second stroke. My mind has been a bit preoccupied as a result.

Let me tell you a little about my grandmother. I could actually go on and on abaout her. In fact, she and I wrote her biography together last year. Her life has been filled with excitement and drama. She's definitely an inspiration to me to live my life to the fullest - as she has certainly done!

She is truly an amazing woman. At 92, she is still living the high life. She drove her corvette like a race car driver until the car finally gave out on her in her mid-80's. Even now she approaches each stop light as if she's in a drag race. She's also performed in local theatre productions. She's volunteered for the Humane Society for practically her entire life. Growing up, she frequently had up to five dogs and four cats simultaneously. Even now, she's managed to smuggle two dogs and a cat into her assisted living home. She was a showgirl dancer in her 20's and has kept dancing throughout her life, though switching to ball room dancing in her golden years - though that woman could still kick her leg up against her face until she had both of her hips replaced in her 80's. And... despite her second stroke, she still plans to attend and perform in a dance competition in Argentina in January 2005! Fortunately, the strokes seem to be affecting her memory more than her functional abilities. But her health isn't getting any better. She also has congestive heart failure.

Her last letter, which was written to me before this most recent stroke said,

"It's natural that I am starting to think about [the end of life]. I hope when I go that my friends and those who love me will not grieve. I feel fortunate to have such an active and enjoyable life at my age. My only hope is to go quickly. [The trip to Argentina will] cost extra, but what the hell - how much longer do I have!"

Of course, doing all the work that I do, I have already appoached some conversations with my grandmother about her eventual death. She already knows that I will grieve despite her wishes to the contrary.

But now I have to ask myself, when is it time to go visit her for my last "goodbye." She may want to go quickly, but I also want a chance to say goodbye. She lives about a five hour plane ride away. I've visited her twice in the last two years (once when she nearly died of her congestive heart failure and once after the first stroke). My grandmother has such strong spirit, she could be around for another five years. And I'm not sure I can afford plane tickets each time she gets hospitalized. On the other side, I am always shocked when people are hospitalized and their families *don't* come to visit. It seems so sad to me. [big sigh] This is such a difficult decision. Can you see why I haven't written? I made the mistake of asking for questions in a recent post - now I want answers again! :-)

Hope you all have Happy Holidays! Thanks so much for all of the supportive comments I've gotten recently!

Monday, December 13, 2004

Love and Aggitation

Thanks so much to all of you who offered support for my holiday blues. I feel so much better after reading all of your kind comments. Honestly. Thank you so much. I hope you are all coping well if you're being hit by the holiday blues. Hugs and cookies - and sweet blogger comments! Yeah, that sure seems to be the cure. :-)

Last night, I worked with Mrs. Roman and Mrs. Lee again.

Mrs. Roman started out the shift telling me that she loved me. According to other nurses, she has not been as affectionate with anyone else. With demenia, I wonder if it is possible to form new short-term memories. I just watched "50 First Dates" with Drew Berrymore and questioned whether or not someone could maintain short-term memory over a twenty-four hour period, but not more. In any case, Mrs. Roman has alerted me to the fact that there is even more that I don't know about memory loss. Perhaps her affection towards me comes from some a small part of her that recognizes me. Or it could be that she senses my comfortability with her and she is responding to that. In either case, we got along famously last night. No cursing nor punches nor biting; just a few shouts of "no!" here and there. And then in the middle of the shift, her "I love you's" were followed by her blowing kisses at me. How could I not respond in kind? I have to say, this is the first patient to whom I've ever said, "I love you, too" and/or blew kisses at. She is so adorable. Despite her poor quality of life due to her multiple medical problems (including the dementia), I will be very sad when she dies.

Mrs. Lee's family is not coping any better than before. They desperately want to take her home for home hospice. But I'm honestly not sure how they will manage. The brothers argue with one another about what should be done. One asked me for pain medicine for his mom last night and when I brought it to the room, the other brother met me at the door and sent me away. I worry about how they will cope with even less support at home. One of the other nurses guesses that they will show up in the emergency room as soon as something minor happens that they don't know how to handle. I guess we'll see. I want them to have that home death, as it is clearly what they think their mother would want. I just hope they can get the support they need at home to make that happen.

Saturday, December 11, 2004

Holiday Blues

I found this great site that gives very concrete tips for holiday blues through the Hospice Blog. I kept thinking enthusiastically, "Yeah, yeah, yeah, this is great. I should really link to it from my site." But I procrastinated and procrastinated. But now it's hit me - the holiday blues are setting in and I'll procrastinate no more.

Whenever I have stuff going on in my personal life that gets me down, my job is so much harder. I've gone months without asking myself, "Do I have the emotional strength to do this job?" But once again, the question lerks in the corners of my mind. I know that this is just because the holidays are getting me down in general, but it feels bad, nonetheless.

At work last night, I had two patients that were particularly emotionally intensive. One of them was good ol' Mrs. Roman. Her daughter has finally agreed to make Mrs. Roman a DNR/DNI (Do Not Resuscitate / Do Not Intubate). (I will write more on code statuses and what they mean at at later date). So the plan is for Mrs. Roman to go home once home hospice services can be arranged. Mrs. Roman was her normal, difficult self. She hollared at me, "Son of a bitch!" She swung her arms out at me, trying to punch me. But she also said (after giving her a third massage of the night), "I love you very much." And you know what? I love this crazy, spunky old woman, too. I have often thought that I'd like to do hospice work. But hospice work seems so much harder. In palliative care, I only see patients when they are hospitalized. This is usually short-term - either to manage severe symptoms so that they can go back home for home hospice or at the very end to assist them in a peaceful death. Hospice works with the same people for the last six months of their life. That's a lot more time for getting emotionally attached. I've only known Mrs. Roman for a few weeks and already, the sorrow is so much greater, knowing she is going to go home to die. Or is it also these damn holiday blues amplifying how I feel?

I also had another palliative care patient who was very aggitated. I've mentioned a few times that a common symptom during end of life is to pick at tubes and clothes. Mrs. Lee was doing this a lot last night. I had a very hard time getting her to settle down. Like the man in the first story about tubes, Mrs. Lee has a urinary catheter in place. She kept trying to pull it out. However, Mrs. Lee has a history of urinary retention. So even if I took it out, she would likely need to have it put back in once her bladder became distended (and she is still having quite a bit of urine output). She is also on a lot of oxygen and kept taking her oxygen mask off. We tried to talk the sons into allowing us to decrease her oxygen for her comfort, but they refused. They believe that she gets more aggitated without oxygen, but they also are afraid she'll die more quickly without it and they want to take her home to die. That is an understandable and admirable, though I'm not sure how realistic, plan. I tried doing some education with the family. Education usually helps with anxiety and the eldest son's anxiety level was through the roof. They refused chaplain services, though I think they were in more need for those services than most. I felt so helpless. And it's true. We are all helpless in this situation. I can't keep their mother from dying. And nothing short of that seems to help the eldest son. The youngest son, fortunately, was more open to talking about the four tasks of living and dying and the four things that matter most. We stood at the foot of Mrs. Lee's bed as her youngest son shared stories with me about his mother's life. We whispered to avoid waking Mrs. Lee. But she awoke and became even more aggitated. I suggested we move closer to the bed. According to Elizabeth Kubler-Ross, people who are dying get very distressed when they hear people whispering about them. They want you to talk in front of them, openly and honestly, about what is happening. Mrs. Lee calmed down immediately when we moved to her bedside and used a normal tone of voice. In fact, she appeared to have fallen right back to sleep.

This family's needs, especially the needs of the eldest son, were so great. I felt troubled to have left my shift feeling like I hadn't been able to bring them any solace or peace. Again, is it me or the Holiday Blues that make this so painful?

I hope you are all enjoying the holidays, whichever winter holiday you celebrate. And may you all be free from the Holiday Blues! :)

Tuesday, December 07, 2004

Drinking to Death

I have had three patients die from liver failure due to alcohol in the last month alone. These patients come in fairly often, but this is statistically far higher than normal for my unit.

I've been wanting a book that lists diseases and what symptoms are to be expected when dying from that disease, because there are clearly some consistencies. These three patients (all coincidentally? men), had huge bloated bellies (called ascites) and grotesquely swollen scrotums; they were all confused; they were jaundiced (look yellow); they bled very easily and a lot. I know the physiology behind some of these symptoms. The liver creates clotting factors which prevent bleeding. Without the liver, the body's ability to create clots (think scabs) is impaired. This site explains some of the other symptoms pretty well.

Every time I've had a drink in the last few weeks, I've thought of these three men. S (my partner) asked me, "How many drinks do you think they had to have to die of liver disease?" Truth is, I don't know. All three were very young. None of them were eligible for a liver transplant, probably at least somewhat due to their alcoholism.

Although I tend to be a bit uncomfortable around drunk people (at least when I am sober), I tend to be very compassionate with these patients. Perhaps it's the alcoholics in my own family whose ends I envision in these patient's eyes.

The end of this post has some good tips for preventing liver disease, as well as some comments on palliative care for people dying of liver disease.

At some point, if I can't find a book on disease-specific experiences of death, perhaps I'll have to write one. But if anyone runs into one in their local bookstore, please let me know! :-)

Saturday, December 04, 2004

Forever Cousin

I was thinking about this poem that was read at my cousin's memorial a few years ago that I wanted to publish in here. I scanned through the titles of all of my prior posts to see if I could link it to a post about her when I realized that I don't think I've written about her in here. Oh, I've written about her elsewhere, but am shocked to find no mention of her in here. Is this true? Or am I just unable to find her? For now, I'll share the poem, but I will definitely write about her some other time.


How old do you have to be to die? he said
and I said I didn't think anybody
was ever old enough

and that made sense to him
since he was still new to the world and
remembered how forever had been.

-Brian Andreas

Friday, December 03, 2004

Emotional Growth

I feel like my blog has shifted to being more intellectual and less emotional/spiritual. I wonder if that is just my perception because the left hemishphere of my brain is hypertrophied from school. :-)

Hypertrophied, for you non-medical folk, is a word used to describe when a muscle becomes enlarged through overuse.

Or is it that I've already done a lot of the emotional growing that I needed to do to get to where I am now (feeling much much more at peace with this work)?

I asked myself this as I saw his youthful age in the chart and felt a pang of sorrow in my heart. But he is so young!

Or is it that I've learned to maintain better boundaries?

I asked myself these questions as I gently combed the rat's nest of knots out of the back of his hair and as I watched his eyes close as I ran my fingers through some of the newly combed strands of hair.

In my heart, I know there are so many answers that my mind and spirit have yet to comprehend. But what happened to all of the questions? Where did they go?

Wednesday, December 01, 2004

Symptomatology of Dying 4: Wavering LOC

As a review, some of the symptoms of dying that I have mentioned to some degree in previous posts include:

One to three months prior to death:
-Spiritual Distress

One to two weeks prior to death:
-Picking at Clothes / Tubing

Days or Hours prior to death:
-Fixed stare (Eyes glassy, tearing, half or fully open)
-Death rattle

Next, I want to write about wavering level of consciousness (LOC).

I have had a couple of patients who surprised me by appearing to have slipped into a coma for hours and hours, their breathing became irregular, but they'd then suddenly wake up and be alert and conversant.

Both of the patients I am thinking of in particular tonight had breast cancer that had metastasized to their brains. One of these women, Taneesha, was in her early 30's. The part of her brain that Taneesha's metastasizes was to involved her speech as well as her memory. She would recognize me when I came into her room, but she always thought she knew me from somewhere else.

"Hi Mia, this is my friend Andre," she'd introduce me to one of her visitors, reading my name off my badge. "Andre, this is Mia, she's my neighbor. Hey, I didn't know you worked here!"

I was not Taneesha's neighbor. I assume I looked familiar to her because she'd seen me several times over a period of two days as her nurse.

The next day, Taneesha was sleeping when I came onto shift. The nurse from the day shift reported she'd been sleeping for about 36 hours straight and was not expected to wake up again.

I began talking to Taneesha's mother about what to expect next. What symptoms might suggest that Taneesha was getting ready to leave her body. I sat down on the couch next to Taneesha's mom as we had this solemn and serious talk.

To my surprise, the next morning, as I walked into the room, Taneesha was wide awake and smiling at me.

"Well, what a lovely surprise to come in here and see that beautiful smile of yours!" I declared. Taneesha's face glowed even brighter.

Brain metastases seems to make some of the characteristic predictions of the natural order of death and dying more difficult to predict.

Jane also had breast cancer that had metastasized to her brain. Her partner Rachel never left her bedside. Jane's metastasize had caused considerable swelling in her brain referred to as cerebral edema. With nowhere for the swelling to go, there was increased pressure inside her skulll, referred to as Increased Cranial Pressure (ICP). Jane's primary symptom as a result of this was severe headaches, which would get worse if she moved. So she remained perfectly still in her bed. Rachel didn't want Jane to get "doped up" on too many pain medicines; she wasn't ready to let Jane go yet. But as time went on, Jane faded away more and more. She was sleeping for longer and longer periods of time even with minimal pain medicine. There is a medication that is used for cerebral edema called Mannitol. Though not commonly used in palliative care, Jane had been receiving it when she was in the ICU and thus Rachel was familiar with its purpose and effects and specifically asked for it by name. The doctors agreed to try it and sure enough, Jane woke up out of her evolving coma. And Jane and Rachel were able to enjoy a few more hours together.

Whether drug-induced or not, people at the end of life can slip in and out of an unarousable slumber. This is a very normal part of the dying process. Some palliative care experts, such as Christine Longaker, believe that the long periods of sleep are due to a need for introspection to help people come to terms with their life and how they've lived it, allowing them to let go of this life and to step forward into the unknown. This period of introspection, however, can be very hard for loved ones. They know that the increased sleep is one step closer to saying "goodbye."